Update shingles vaccination before start JAK inhibitor

[Taraheart]

Thanks all…found all the information I need re shingles vaccination. Now aware there’s a non live one, Shingrix, but as I’m 62 it may take a bit of support (or saving up!) to get it.Only another 8 years to wait! Why isn’t this offered as routine for us folks….know it doesn’t provide full immunity..what is it 50%…I’ll take those odds xxx

[Mistydawn]

Hi Taraheart, thankfully I had no issues getting the Shingrix vaccine through my GP before I started on Rinvoq.

I hear what you say in your bio about the medics not listening. As per my recent post I’m now being offered Amgevita. Side effects include dizziness and ‘room spinning’ sensations. I keep telling them I suffer from vertiginous migraines which gives me the same symptoms of dizziness and ‘room spinning’ so what do they do but offer me a medication that has the same side effects!!! I’m desperately losing faith in my new consultant!!

As for Rinvoq, I only took it for a week, came out in a rash on my upper abdomen with severe constant headaches which kept me awake through the night. My digestive system was not happy either, loose stools and all this within a few days of taking the daily tablet.

Hope Rinvoq works g f or you xx

[AgedCrone]

There has been a really long study…about 15 years ….on Shingles vaccinations & the outcome seems to have been it is most effective for people aged between 70/79…after 80 it didn’t help much…but as usual people with compromised immune systems don’t seem to have been included in that study.During the study I had an ongoing “discussion” with the GP practice nurse who sent me the same letter every birthday up to 79 describing the horrible effects of Shingles for someone of my age.

I would write back very politely explaining why I couldn’t have it.,,,eventually I spoke to her & she bluntly told me my rheumatologist was wrong…& I must have it. Of course I didn’t….it was pre Shingrix being available.

On my medical record it now just says “Refused vaccine”…..so anyone reading that would have no idea why.

But there is a happy ending…I did have Shingles when I was around 76….I was lucky & got over it very. quickly.

Some GPs will arrange for people to have Shingrix if their consultant so advises, but it seems a lot won’t.

Hope you manage to persuade your GP you need it.

[Leics in reply to AgedCrone]

I refused it too as the risk of a live vaccine was too great in my case. Also find that the flu jab puts my system into a massive flare whichever one I have and it stops any meds from working too so I’ve decided to take my chances on that one as well. We have to weigh up our risk factors and do what we feel is right for us.

[AgedCrone in reply to Leics]

Yes you are right…I honestly think apart from the actual rheumatologist & some of the rheumy nurses we do know what is best for ourselves. After years of having the Influenza vaccination with no problems, I ended up with a horrible purple post viral rash after the jab about three years ago…it was first diagnosed as Drug Induced Lupus…..my GP was less scary & diagnosed heat rash……in November…so when it hadn’t gone after Christmas I took myself off to my dermatologist and after about three biopsies it came back as a post viral rash. Now every year I have the flu jab I get a shadow rash just like it.

It doesn’t hurt & as I’m assured it’s not dangerous …it doesn’t itch…so it’s not uncomfortable….. it just doesn’t look very nice& it goes away in a month or two ….I chance having the flu vaccination.

In fact I got it after my first AZ Covid19 vaccination too…..but as I was 99% sure what it was I ignored it…& it faded as usual.

I’m now wondering how to fit in Covid & Flu vaccinations with Rtx infusions…I’m almost minded to forget the lot!

[Leics in reply to AgedCrone]

I know what you mean even though I had several chest infections last year I doubt I will have the flu jab again this year. My husband got the most terrible hives after Pfizer jabs so he’s not allowed that anymore and has only had two flu jabs in his lifetime and ended up quite I’ll after both of them and he doesn’t normally get infections one of them turned into double pneumonia which after 4 months he still has residual creasing in his lungs but the pleurisy isn’t as bad as it was. I dunno I’ve had 4 covid jabs all Pfizer but don’t know if I have any antibodies as my immune system doesn’t work after Rtx knocked it out several years ago. I will go with gut instinct I think.

[AgedCrone in reply to Leics]

Me too….I’m thinking I either get the darned virus or I don’t….I’m lucky in that I don’t get infections caused by RA or the drugs I take for it ..but I nearly didn’t make it after encephalitis & I’ve had cancer twice so I reckon just get on with life best I can & not worry “what if”?

[Leics in reply to AgedCrone]

Yeah me too I had cancer too in my 30’s but my main issue is my immune system being knocked out so have to be cautious with that and it does make being treated for RA difficult. But I’m still here and fighting haha.

[Wantplaytennis]

Cos your immunosuppressed therefore prone to virals,insist with your gp.Shingles is no fun believe me.

[AgedCrone in reply to Wantplaytennis]

Unfortunately you can’t “insist”….you can complain, & ask for a reconsideration, but you cannot force your GP to do anything against his will.Yes…..Shingles can be very nasty..but not always.

I had it over my eye & up into my scalp when I was about 76….it was painful & I did have headaches for a while after the blisters disappeared…but I didn’t need hospital treatment like some people do…& I recovered well.

It would be have been very inconvenient if I had still been working…luckily that wasn’t the case.

I do hope I never get it again …but that’s out of my hands.

[liveinwoods]

I agree that shingles is no fun. I had it go all the way into my head and near my eye. There were large blisters that took several weeks to heal. I was only 30 when I got it and there were no antivirals available at the time. Might be wise to consider getting the shots.